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Offering support, sharing experiences

Danette Dooley

danette@nl.rogers.com

The Alzheimer Society of Newfoundland and Labrador is looking for volunteers to join its senior advisory committee. The committee is working to establish more family support groups in various areas of the province.

“We are hoping to establish 10 groups in 2020 and we are looking for volunteers to be on the seniors’ advisory committee to help identify areas of the province where people may need support,” said Shirley Lucas, the CEO of the Alzheimer Society of Newfoundland and Labrador.

The committee welcomes seniors who have experience with dementia and people with connections in the community who can help identify key players, who may also be able to offer support, Lucas said.

The society is also looking for volunteer facilitators for the family support groups, Lucas said. A facilitator could be a health-care professional or a family member who has experience with the disease.

Facilitators will be trained before the support group is offered in their area.

Lucas said the need to offer more family support groups became evident by a dramatic increase in people accessing the society’s First Link program. The program connects people living with, or supporting someone living with, dementia with health services, information and other supports.

In 2018, the number of people using the program increased by more than 50 per cent, Lucas said. “That was an indication to us that there needs to be more support on the ground in various areas of the province,” Lucas said.

Malcolm (Mac) Butt is a member of the Alzheimer Society of Newfoundland and Labrador’s senior advisory committee and has participated in several family support groups in St. John’s.

Butt’s wife, Shirley, was diagnosed with dementia in 2009. She passed away in March 2018. Being involved in a family support group is “quite beneficial,” Butt said.

“It’s not a big deal to be able to start a family support group in a community. Any two like-minded people can do it,” he said.

Those who take part in a support group learn how to care for people with dementia, he said. It’s important to live in the reality of the person with the disease, he added.

“If Mom says the tablecloth is blue, then the tablecloth is blue ... there are lots of little things like that you learn,” he said.

Those interested in volunteering on the senior advisory committee or in any other capacity can email info@alzheimernl.ca or call 709-576-0608 or toll-free at 1-877-776-0608. Information can also be found online at alzheimernl.ca.

Raising awareness

The Alzheimer Society of Canada launched its third anti-stigma campaign in January, which saw people affected by dementia telling their stories to help others understand more about the disease.

According to a press release from the Alzheimer Society of Canada on Jan. 6, the campaign gives a voice to Canadians with dementia who are frustrated by the constant assumptions and misinformation associated with the disease.

Harold Hefferton of St. John’s is among those lending their voice to the campaign. Hefferton is also a member of the Alzheimer Society of Newfoundland and Labrador’s senior advisory committee and has participated in several family support groups.

Hefferton’s wife, Barbara, was 61 years old when she was diagnosed with Alzheimer’s disease. She now lives in a long-term care facility.

“People say, ‘She doesn’t seem that bad, you’d never know she had anything wrong.’ It might be well meaning, but it makes you question yourself that maybe it’s not all that bad — but it is,” Hefferton said in the release.

While telling his story on the campaign’s website (ilivewithdementia.ca), Hefferton said when his wife was diagnosed with Alzheimer’s disease, the family was concerned about her reaction to the diagnosis and the feeling of the unknown on how the disease would progress.

“My children were concerned and worried about her, and felt the fear of losing the ‘Mom’ they know. This was true for the rest of the family, sisters, in laws .... It was scary to say the least.”

And while most people were “sympathetic and many were very surprised with the diagnosis,” he said on the website, some people “made light” of the news.

“People experiencing the disease need to speak out more, share their journey with others and encourage people to not fear and hide from the diagnosis and instead seek help,” he said.

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